As a person with a severe physical disability, I need a lot of help just to survive. My entire life is one of interdependence. There are shoes to be tied, showers to be given, clothes to be put on and taken off. By necessity, I must embrace togetherness even in intimate moments, a task that requires tremendous peace with my body and tremendous awareness that as human beings, we need each other. It can be beautiful, when another person learns the slow, crooked rhythm of my body and falls in sync with the pieces of the world as I see it. The way I like my hair brushed, the way my hands settle into a fist when I’m thinking deeply. The way I laugh with my whole being. The way excitement cannot hide itself because it courses through my muscles like an electric current. Done right, this interdependent caregiving relationship is a demonstration of everything for which a community should strive. But when the responsibility is neglected, I am reminded how frustrating it can be to rely on someone else just to go to the bathroom.
I am fortunate to have access to paid caregivers through state-sponsored services. Yet the reality of my life is such that my needs extend far beyond the 8-10 hours the powers that be call “medically necessary”. The happenings of a life cannot be neatly contained in a bureaucratically- bestowed time window. After those hours are up, the beat goes on. I cannot possibly pay for every iota of help I require. Think of every cup of juice you pour, every errand you run, every time you plug in your phone, and envision how much it would cost if someone asked you to pay every time you had a basic human need. With the lifetime cost of cerebral palsy already estimated to be about 1 million dollars[i], things add up quickly. This is not to make you pity me; I simply want to quantify how expensive just getting by can be. When the expectation is constant money, by the time you pay someone to bathe you, dress you, and toilet you, there’s no pocket change left to set up your new TV, and you better hope someone cares enough to do you a favor. This is not to argue either that paid caregiving has no place. Compensation for care is very important. I merely want to demonstrate that sometimes, we disabled people need someone to “do us a solid.”
Herein lies the problem with the term “special needs.” It is just a way to neatly package the needs of the disabled as someone else’s problem— “special,” and therefore, outside the realm of what human beings ought to do for each other as neighbors in a world where everyone will need help at some point. Non-disabled people do “good deeds” for each other regularly because that’s what friends (and good people) are for. Sometimes, good deeds take the form of rides, dinners made, or a couple of hours watching the kids. Yet I have observed that payment or “credit” for helping disabled people has become so engrained in our culture that we are frequently excluded from the receipt of unpaid kindness. In other words, good deeds for us often have price tags. Too many people feel that they deserve money, volunteer hours, or media attention just for being with us. I want to be a friend, not a service project.
The sort of help I need may not be typical. It may be something your six –year- old can do on his own. It may be a task that when you consider what it would be like to need help with such a thing, you squirm. But no, my needs are not special. They are so profoundly human that most people take care of these needs without even thinking.
I want to reiterate that I am not implying that all caregiving should be free. I am suggesting, as a human being, that people without disabilities need to help us out sometimes for the sake of goodness, just as they do for each other. That is true even when the task with which I need assistance is not quite the same as baking brownies for the neighbor’s dinner party. Worrying that someone will perceive you as “taking advantage” every time you ask for help is heartbreaking. So is worrying that people will decide it’s too much work to be your friend. The heartbreak is infinitely multiplied when you know that if you had the physical ability, you’d help another person lie down on a bed or take a bite of food without thinking for a minute about money. Paid caregiving is important, but we cannot let it cloud our ability to see the value of basic kindness.
In his work The Dismal Science: How Thinking Like An Economist Undermines Community, Marglin writes, “In the twentieth century, what neighbors once did for the incapacitated has become the job of practical nurses, and is no longer an activity that binds the community together—except where poverty puts professional nursing out of economic range.”[ii] While I reject the characterization of disabled people as “incapacitated,” and I count nurses among the most noble and necessary professionals, I often long for that bygone sense of neighborly commitment as a matter of doing good. And I hope the world will remember that we disabled folks, too, need others to look upon each of us and say, “he ain’t heavy; he’s my brother.”
I think of Martin Luther King Jr.’s vision for the “beloved community,” in which he challenges us to build a society founded on agape love. Dr. King described agape love as “understanding, redeeming goodwill for all,” an “overflowing love which is purely spontaneous, unmotivated, groundless and creative.” Agape love, he added, “does not begin by discriminating between worthy and unworthy people…it begins by loving others for their sakes.”[iii] I believe that the beloved community can exist, and I catch glimpses of it in the hearts of the most special people I know. But until its value is recognized by all, I must battle with the little ableist voice in my head that tells me, “because of your disability, being kind to you is always a paying job.” A goal of mine is to let others say, “You are my friend, I’ve got your back, and you don’t owe me anything.” But more than that, my goal is to trust that its true.
[ii] Marglin, S. A. (2008). The dismal science: How thinking like an economist undermines community, p. 23. Boston, MA: Harvard University Press.